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27 May 2018

Being faced with late termination choices

This is a post that has been sitting in my drafts for a long while, with only the title written. I've known for a long time that I've wanted to write it, but I've been avoiding it all the while the thoughts and words still swimming round my head.

I'm not even sure how it's going to go, but I feel I need to write it. Maybe I've been urged to by all the things circulating about repealing the 8th amendment and the referendum that has just happened in Ireland (which I 100% am a YES to) so I felt like maybe now was the time. I want to be as honest as possible and state that this is just MY experience, MY feelings at the time and now is in NO-WAY a judgement on what other people have done or may do in the future. It's solely about my life and the choices we made. I would never ever judge any other person from doing differently from myself, because everyone is different, everyone's reasons are different and there will never be a need to justify. It's also a warning that this is a difficult subject to talk about and I'm fully aware that this could be triggering and upsetting for people to read. So please bear that in mind.

So I want to talk about the part of my pregnancy when we found out that there could have been something wrong with our unborn child. As a little history fill in (or you can read about it here) we had our anatomy scan at 20 weeks, but we were told that the baby wasn't in the best position to get all the correct measurements and tick off all the checks, so we had to come back for another. The second scan was about 10 days later and again they were having trouble finding what they needed. I was told this was all very normal. They still couldn't check everything off, especially with the heart, so I was booked into a fetel medicine scan with a doctor. Looking back I now know that they probably already knew that something wasn't quite right, but needed to make sure. At 24 weeks I attended the scan alone, as Rob was with Theo, only to have my world come crashing down.

We were told that the baby had a potential heart condition and it was possible that it was linked to a genetic condition. I was given a brief outline of what this could possibly mean and the words termination were mentioned. I was taken to a little side room, and for anyone who has ever had to be taken into a little side room, you know it's not a place you really want to be. It's where news is broken, worlds are shattered and things are come to terms with. The plan was to have more in depth scans of the heart and I was offered amniocentesis. I think at some point an appointment was made and a week or so later we had the test done. All the while this baby growing inside of me was moving around, growing and filling me with such equal measures of joy and fear. I was growing attached but we had no idea what was ahead of us. The amnio was traumatic, and was the first proper time where I couldn't look at my baby inside of me and I was starting to try and steel myself to make the hardest decision of my life.

I remember them running through the options as technically our time was running out if we decided for whatever reason to terminate the baby. I was 24/5 weeks which is usually the cut off. At this point we still didn't know whether our baby would be able to survive outside once it had been born, if we were to go to term. We still had to wait to results. All I remember thinking was how are we ever going to make the decision, both lead to utter heartbreak, to a place where our lives will be changed forever, to a life we never thought we'd have, to potential scenes and images that would never leave you. It wasn't fair, it isn't fair that this has to happen to people. I remember asking the nurse, in that little side room, what would happen if we did decide to terminate. She told me in the best way possible that I would have my labour started for me, I would go through it like a normal birth, I would deliver my baby. The baby would be small of course, but formed. I asked whether the baby would still be alive, and she answered yes, but they would give an injection to painlessly stop the babies heart.

I don't remember exactly what happened next, but my face felt hot, tears rolled down my cheeks and I tried desperately to imagine and to block out at the same time how it would feel to be in that moment. What would I do. Would I be able to look at my baby who I decided would be too hard to continue with. Would I hold the baby, would their image be burned into my memory forever. Would we name the baby, or would it be less painful to not, to not know what they looked like, who they could've been. I didn't know whether I had strength for that. To always have it in my head that what could have been. If we knew that the baby would never survive, or have a desperately limited life and existence then maybe the choice would've been easier. We would be making the decision that would be best for that baby. But what if the baby would just be different, have different needs but their quality of life would be similar to our own. But how would that effect our lives, the life of our other child. There were so so many questions and thoughts that it just seemed impossible to ever be able to make that call, to decide one way or the other. Both would be heartbreaking.

But it seemed as though we were saved from making it, as not long after we were told the results from the amnio, and it all looked clear. We were told over the phone, but I don't remember hearing the bit about it not being able to pick up individual changes to genes. Which is of course what Rohan had.

We went through the rest of the pregnancy still in shock, upset and worried for the future, but we thought that the baby would be fine. We thought that he would have a heart condition which they could operate on, and his feet would need fixing, but apart from that (which actually is enough on it's own) we thought that everything else was fine. We dodged having to make the hardest choice of our lives. But then Rohan was born and it was quickly apparent that there was in fact other things wrong with him. A life we thought we had been spared suddenly opened out again before us, but now there was no choice. He was here, he was fighting and we were trying our hardest to keep it all together whilst our worlds were shattered once more.

I'm going to be honest and say that there isn't really a day that goes by where I don't think "what if". What if we'd known he would have this condition back when we could have still made a decision. What if we had been made to make the decision and decided to terminate. What if none of this had happened to us at all and we had a completely normal pregnancy and healthy baby. Would all of it still equate to Rohan? Would the baby we had to make the decision on be Rohan? Would the baby we could potentially be living without, but still carry in our hearts be Rohan? Would the healthy baby be Rohan? Or is he him because of all of this?

I look at my boy and feel terrible down to the core that I could even think these thoughts. But I know that there is justification in them. Would we have chosen this life if we knew how it would be? But we can't go back in time, we can't change what happened, and for whatever reason Rohan is here with us, being the brilliant boy he is. Our lives are so different to what we thought they would be, life is hard, but all these things led up to this point of him being here and we are just trying our hardest to make the best of it. He was given to us for a reason, things worked out this way for a reason. Just like they would have if it had gone the other way.

Going back to the referendum and thinking we faced all of this with a choice, is something we didn't even think about. To take something like that for granted, that had we needed it or wanted it, we could have chosen to safely, legally end the pregnancy, without shame and in our own country. For us, in the end we didn't have to make that choice, but it was there. I'm so thankful that it was, and I'm so thankful that it now is possible for the women of Ireland too."It's also a day when we say no more. No more to doctors telling their patients there's nothing can be done for them in their own country, no more lonely journeys across the Irish Sea, no more stigma as the veil of secrecy is lifted and no more isolation as the burden of shame is gone." - Leo Varadkar

I hope that by me sharing a little of my experience has been ok. I will always remember the look of that little side room. I still have the image of the terrifying amnio etched in my memory. I still remember walking through those few weeks in such pain and conflict. I remember feeling like I would never survive either of the options laid out before us. There is still a lot of pain, a lot of buried feelings that might not ever be resolved around this subject, and this really just scratching the surface. But I'm glad to be able to start talking about it, on here, my safe space.

I just wanted to add that this subject is so tricky. I can honestly say I don't know what decision we would've made if we knew everything before hand and had to make a decision, but because we thought that the baby would survive and have a good quality of life we continued. That's not to say that I don't think babies or humans with disabilities don't deserve to be born, it's just whether the people bringing them into this world can provide all that they can for that person, whether that be material, emotional and environmental. I know that these decisions are NEVER made lightly, whichever way you go, and I also know that the what ifs will always be there for either side. I can't stand from one side or the other because I feel like we didn't actually have to make the decision, and I hope with all my heart that anyone reading this doesn't feel like I've made them feel bad for whatever decision they may have had to make. No-one wants to be there, but for some of us this is what we face. I just also wanted to add that had we known what was to come, and we had to make a choice, I still don't know what we would've done, but I know that Rohan is here, and we love him with all our hearts.